Posted 08 January 2013 - 10:08 AM
I really feel for you as we were in this situation too a few months ago. DD also had suspected reflux and allergy issues and was an hysterical feeder from birth, ending up on an NG tube for a while with hypoallergenic formula. 100ml was a very good feed for her most of the time, we struggled to get her taking more than about 40-60ml orally.
I am very sorry to say it but I do not believe there are any magic answers other than time which will help you. Then single most important thing you can do is try to keep your bub feeding orally as much as possible, and this means not forcing the bottle on bub, not forcing too much in orally when bub gives 'stop' signals, and not giving too much down the tube so that bub ends up lazy and not hungry enough to take oral feeds. Unfortunately, giving too much orally or down the tube will risk upsetting things. I would be inclined to follow their advice very carefully and struggle through for another month. If you have a partner,mother, friend or anyone who can help, don't hesitate for a second to ask them to do feeds, even if it is a hassle teaching them to handle the tube, PH testing etc.
In another month, bub will be able to try solids and for us this was a huge help. It filled her up a bit, gave us a chance to experience feeding as a positive event, and helped her sleep a little better as she had something on her tummy. She took to spoon feeding solids very enthusiastically - a relief as we were worried she may have further oral aversions. If you can make it through another month, that option will open up for you and hopefully make things easier. Also, I assume bub is on some kind of medication like omeprazole - does this maybe need to be increased a bit? We got to a huge dose (10ml a day) but eventually we found the critical point where it worked.
I am so sorry you are going through this, and I can recall the worry and confusion and despair about where it will end very clearly. I know every day feels like an eternity at the moment, but please take hope from our journey. It can get better, and in the next couple of months it probably will. DD is off the NG tube, quite likes bottles now (though will never be a big drinker) and eats really well. At 11 months, she's finally got it together - and so have we. Do feel free to PM me if you want.